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America's AIDS Apartheid

The hope in Tracy's voice was contagious. He had just come out of Alabama's state prison system and was looking forward to starting over. He'd gotten some part-time work and secured a comfortable, if sparsely furnished apartment. He was a classic Southern hunk -- a handsome, stout, mocha-skinned man with a slow drawl and a natural charm -- and so had no trouble finding women to date. That was exciting but also scary, because Tracy had newly committed himself to confronting his 12-year-old HIV infection.

He beamed with pride at the progress he was making. "I talked to one," he bashfully boasted to me about his coming-out process to would-be girlfriends. She'd been pressuring him to have sex, and he knew he had to disclose first. "She appreciated my honesty." Things were going well.

I wanted to be hopeful for Tracy, too. After more than a decade of writing about AIDS, I've come to recognize the liberated look on his face -- the relief that shines in someone's eyes when he gives up on fear and shame and starts figuring out how to live with -- rather than in spite of -- an HIV diagnosis. But I knew Tracy would get little help on what was going to be a hard road to wellness, because his story arc is sadly typical of the epidemic that is now raging around him -- years of denial masquerading as optimism, followed by a mad scramble to patch things up when it's already too late.

Tracy was diagnosed back in 1993, the first time he went into lockup. He got no counseling and no treatment, just the news that he was HIV–positive. He was outwardly healthy so, not surprisingly, he ignored this piece of overwhelming, incomprehensible information and went on with his life, bouncing in and out of jail. It wasn't until 2005, the year I met him, that Tracy finally came to understand the gravity of his situation. He'd gotten some education during his last stint in prison, after activists sued the state and forced it to provide meaningful care to the HIV–positive inmates. Who knows how many others he passed on the virus to in the interim. But to focus on missed HIV–prevention opportunities is crazy-making; they are too many to count. What mattered as I listened to Tracy describe his future was that, finally, he preferred reality to the false comfort of denial. That's more than I can say for both the federal and state-level response to the fast-growing ranks of people like him.

America declared a terribly premature victory over AIDS more than a decade ago, when new treatment regimens hit the market and dramatically halted the parade of young funerals. And there's no denying the progress: Today's death rate is a small fraction of what it was then. But controlling an epidemic isn't the same as ending it. We confused the two achievements and turned our attention to epidemics overseas. We've spent years watching with sympathetic awe as infection rates have spiraled upward in places like sub-Saharan Africa, where people have struggled to afford the lifesaving drugs we assume are readily available here at home. All the while, the U.S. epidemic has been barreling toward the precipice.

More Americans are living with HIV today than ever before -- an estimated 1.2 million -- and the number is increasing by tens of thousands annually. Worse, there's every reason to believe the problem is exponentially graver than we know. AIDS researchers and service providers have been anxiously awaiting a U.S. Centers for Disease Control and Prevention (CDC) study that is expected to find the epidemic to be far larger than believed. Yet, over the last eight years policy-makers have so neglected the care system that we cobbled together in the 1990s to control the epidemic that people have died, right here in America, while lingering on treatment waiting lists like those in the developing world.

Meanwhile, an AIDS apartheid has hardened here. John Edwards' two Americas are perhaps most clearly witnessed in the waiting rooms of AIDS clinics around the country. African Americans, who are 13 percent of the U.S. population, now account for a stunning half of all people living with HIV/AIDS and half of all those newly infected every year. The numbers are even more shocking when you look at the people among whom the virus is spreading most quickly. One depressing study of gay and bisexual men in five large U.S. cities found 46 percent of black men to already be positive. Nearly half. No population on Earth has registered infection rates that high.

Nowhere is this crisis more acute than in the southeast United States. What was once considered an urban, coastal epidemic -- centered in gay havens like New York City, San Francisco, and Los Angeles -- is now a surprisingly rural, Southern one. More than half of all new infections logged between 2001 and 2004 were found in the South. Those infections are far more likely to be found among Southerners who are black, low-income, and diagnosed with advanced conditions they do not have the resources to control.

Yet Southern state governments have only recently begun to understand that they preside over the new ground zero for America's AIDS epidemic. The AIDS clinic Tracy turned to for care was the only one serving the entire southeastern quadrant of Alabama. The clinic's efforts are heroic, but the thin network it has built is hardly enough to absorb demand in an area that's home to the state's highest per capita HIV–infection rate. That's sadly typical of the region. If the AIDS–care safety net is in tatters nationally, in many Southern states it never existed in the first place. Nearly three decades after the epidemic's start, America has so squandered its successes that we will have to entirely re-create them -- or face a return to the days of the costly, painful, and needless deaths of thousands.

***

AIDS has had a racially lopsided impact on America from the start. African Americans accounted for roughly a quarter of AIDS deaths as early as 1985. But the definitive cleaving of AIDS into two epidemics came about a decade later, when a remarkable scientific breakthrough turned HIV infection into a manageable, if lifelong condition -- for those with access to treatment.

The first AIDS drug, known as AZT, didn't hit the market until the latter half of the 1980s. AZT was actually first developed in 1964, through cancer research funded by the National Institutes of Health. It never panned out as a cancer drug and was shelved until HIV came along, when the patent owner, Burroughs Wellcome (now GlaxoSmithKline), brushed off the dust and began studying it as an anti–HIV medicine. A 1986 clinical trial found phenomenal success, and America quickly revved itself into the first of what would be a series of overly optimistic assessments of our ability to quickly and easily end AIDS.

AZT did momentarily halt death rates, but that success proved unsustainable. The drug slowed HIV's progression in the body but couldn't maintain long-term control. Science stayed on the virus' trail, gradually adding new drugs to the treatment arsenal throughout the early 1990s. The turning point, however, came in 1996, when Dr. David Ho walked into the biennial International AIDS Conference -- reconvening in Mexico City this August -- and shocked the world by demonstrating his ability to bring patients back from the brink of death.

Ho had been among a handful of ambitious, young researchers who aggressively pursued HIV from the epidemic's onset. He was already credited with, among other things, establishing that saliva doesn't carry enough of the virus for it to be transmitted via kissing and, conversely, that HIV lives well in semen. In the mid-1980s, he was among the first to notice that a new HIV infection is usually accompanied by a brief period of flu-like symptoms, and much of his research from then on focused on how HIV behaves immediately after entering the body.

Conventional wisdom in the mid-1990s was that the virus sat dormant for years before launching its attack. Ho established that it actually engages the human body in a turf war from the beginning to the end—copying itself millions of times a day as it struggles to outpace the immune system. The take-away for Ho was that, contrary to treatment norms at the time, the immune system needs help before patients start getting sick, at which point the body is already losing the fight.

He matched the existing AIDS meds with a new class of drugs called protease inhibitors and bombarded the immune system with an intensive regimen. HIV couldn't mutate fast enough to get around this "combination therapy," so the immune system could catch up with it and beat patients' viral loads down to immeasurably small numbers. After 15 years of steadily increasing death rates, the numbers fell by 21 percent in a single year. By 1998, mortality had dropped by an astounding 70 percent.

It was morning in America. Time magazine named Ho its 1996 Man of the Year. The New York Times Magazine ran a cover story titled, "When Plagues End." The Wall Street Journal, Newsweek, and others chimed in with similar speculation about the end of AIDS. In a sign of just how nonchalant we became, it wasn't long before the treatment Ho dreamed up became popularly known as the "AIDS cocktail" -- an odd moniker for something that's far more akin to a lifelong chemotherapy treatment than happy hour. Drug company ads featuring buff men rock climbing and mountain biking proliferated -- people with AIDS, once pariahs, got modeling opportunities.

The much-touted magical turnaround was, however, uneven from its start. The drugs are extremely expensive, today costing as much as $20,000 for a year's treatment, not counting all of the auxiliary care and meds that are needed to stay healthy. Moreover, making them work well means having medical providers schooled in a rapidly changing, cutting-edge treatment science. Black Americans are less likely to have either of these resources, and the racial differential in AIDS death rates reflects that fact. Indeed, the death rate for 1996 marked two huge turning points in the epidemic: Not only was it the first year in which fewer people died than the year before, it was also the first year in which more blacks died than whites. By 2004, nearly twice as many blacks as whites died from AIDS.

All signs point to that disparity growing, in part because the number of African Americans infected is likely higher than we know, particularly in the South. The CDC has tracked the epidemic by counting the number of people who test positive each year and extrapolating from that an estimate of the total number infected. Until now, researchers haven't been able to differentiate between an infection that happened three months ago and three years ago --which means they can't tell how fast or slow the virus is spreading, or where and among whom. At press time, however, the CDC was preparing to release the results of a closely guarded study that deploys new technology to determine how long ago a newly diagnosed infection took place. The study is expected to raise the agency's estimate for the size of the epidemic by as much as half, a growth driven by infections among African Americans.

The million-dollar question, of course, is why blacks are so much more likely to both get infected with and die from HIV. The theories are manifold, ranging from biology to public-policy failures. On the policy end of things, one villain is clearly the prison system. One of the many ways in which the massive forced migration of black men in and out of state and federal lockup destroys communities is through spreading disease. "It's definitely in there," says Tracy of the sex he saw in prison. "And ain't no condoms." Just two states allow condoms behind bars, virtually ensuring the spread of infectious diseases. Forward-thinking researchers have begun tracking how that reverberates into the broader community, perhaps explaining why two-thirds of new infections are logged among black women.

Regardless of what goes on inside prisons, the act of churning so many men in and out of black neighborhoods is itself a disease vector. Research shows that black women are more likely than women of other races to be serial monogamists, cycling through relationships with a small circle of men who come in and out of their lives -- which means once one person in that circle gets infected, the virus spreads through it like brush fire. Black Americans with HIV/AIDS are also far less likely to be in treatment than their white peers -- and because effective treatment lowers the amount of HIV in an infected person's blood, black people are therefore more likely to pass on the virus during unprotected sex.

And so the widespread existence of untreated HIV inside small, overlapping black sexual networks makes someone inside that network all the more likely to encounter it, meaning the same decision about whether to have unprotected sex involves far greater stakes. It's an insidious, self-reinforcing loop.

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Whatever is causing the racial disparity in infection rates, it is ultimately going to collapse the system we built to make AIDS care accessible in the United States. The fast-growing African American epidemic is both heavily reliant upon the public-care system and deeply Southern. Two-thirds of black people getting AIDS care pay for it with public insurance. And nowhere are the racial disparities in who's getting infected more stark than in the South. South Carolina's epidemic is 74 percent black. North Carolina's is 68 percent. Alabama's is 64 percent. These states have been utterly unable to meet the demand those numbers reflect.

When I met Tracy in 2005, Alabama was experiencing what everyone hoped would be a wake-up call. The state-run program that makes AIDS drugs affordable to uninsured patients had a waiting list of more than 600 people. The previous year, the national total for people waiting for treatment had hit an all-time high, at just over 1,600. So, in what has been a decades-long pattern of piecemeal solutions to AIDS, the feds and the state patched together emergency funding and cleared Alabama's list.

By 2006, AIDS–funding problems were cropping up elsewhere in the region. South Carolina had replaced Alabama as the crisis of the moment. That November, after months of warnings from AIDS service providers around the state, the health department confirmed everyone's fears: Three people had died while waiting for access to the AIDS Drug Assistance Program, known as ADAP; a fourth died less than a month later. South Carolina's waiting list was finally cleared last summer, but the state has long been a standout offender in turning away people who can't afford AIDS medications. The state's waiting list has averaged just over 300 people since the summer of 2002, giving it the second-worst record in the country, behind neighboring North Carolina.

When AZT hit the market in 1987, its whopping price tag of $10,000 for a year's treatment spurred AIDS activists to storm the stock exchange and blockade the Food and Drug Administration, demanding the price come down. Congress responded by handing out a series of small, one-time grants to states and cities to subsidize the price of AZT. The 1990 Ryan White CARE Act finally created what was to be a soup-to-nuts response, setting up a Byzantine formula to distribute money to cities and states based on the intensity of their individual epidemics. Local health departments spend the federal money on a range of services needed to keep people healthy, including ADAP.

The CARE Act has been remarkably successful in keeping low-income Americans with HIV/AIDS alive. Medicaid and Medicare are the nation's largest payers for AIDS treatment, but ADAP fills the growing gap between those poor enough to qualify for public insurance and those with robust enough private insurance to afford the high-end medical care an HIV infection demands. However, as the legislation's name implies -- it's the Comprehensive AIDS Resources Emergency Act -- lawmakers never understood it as a permanent entity that would require ongoing and increasing support.

David Ho's treatment revolution turned the AIDS–care safety net from a hospice program into one that subsidizes exorbitantly expensive long-term treatment. Drug costs for people enrolled in ADAP reached an estimated $1.2 billion last year. That level of spending has simply proven unsustainable, particularly in Southern states, which are home to more than a third of ADAP clients. The South's budget troubles are partially due to the fact that Southern state legislatures don't chip in to support the program as much as those in the Northeast and West, leaving the health departments more heavily dependent upon federal money. Southern AIDS activists insist, however, that Washington shares some blame because the CARE Act's complicated funding formula has for years been weighted in favor of the cities and states with older epidemics.

But no matter how Congress divides the money, the reality is that there's just not enough to go around. Even as ADAP has grown exponentially, the federal contribution to it has either remained flat or, as it did last year, declined. Similarly, the CARE Act has not seen a meaningful funding increase since 2003, despite the fact that the epidemic hit a record high in 2005 and has grown by anywhere from 40,000 to 60,000 infections a year since then. And according to the federal agency that administers the CARE Act, nearly half of those people will turn to the program for help. Whether they'll find it depends on where they live.

The system has survived thus far on a series of last-minute rescues. When waiting lists hit their peak in 2004, the White House shepherded through Congress a one-time infusion of cash to 10 states with backlogs. In 2006, Congress gave the program another one-time shot in the arm. Several states have also been able to shift drug costs into the expanded Medicare program. And some Southern states, most notably South Carolina, have finally cobbled together their own AIDS–care budgets. By September 2007 there were, for the first time, no waiting lists. Few expect that victory to survive the fiscal year, however.

The recurring funding shortages are owed in part to the same ideological nickel-and-diming that's undermined a wide range of domestic programs in the Bush era. But it is also clear that America has never come to grips with the fact that AIDS demands a comprehensive, ongoing public-health commitment rather than finger-in-the-dam, emergency measures. Here's a telling fact: The U.S. has never had an overarching national plan for responding to AIDS, something that we make a prerequisite for any poorer country seeking foreign aid to deal with its own epidemic.

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The disarray caused by this lack of planning reaches past ADAP, or even the broader net of HIV/AIDS treatment and care. Last spring, CDC director Julie Gerberding convened what the agency billed as a historic meeting of African American community leaders to enlist them in launching a new, comprehensive prevention push. Gerberding implored a crowd that ranged from Urban League executives to rap star Ludacris' mom to make HIV a priority. "You can't solve big problems with small investments," Gerberding said wisely. "You need big investments to solve big problems." She vowed to take the same message to Congress.

No one listened. The CDC's HIV–prevention budget has never topped $800 million and has declined or remained flat every year this century. The only area of the prevention budget that's increased in recent years is that for testing, though even that money has actually come from moving cash out of other piles, according to the Community HIV/AIDS Mobilization Project.

The CDC has made testing the central plank of its prevention work. The agency cites studies that show roughly a quarter of all HIV–positive Americans don't know they are infected and that these undiagnosed cases are fueling the spread of the virus. So in 2006, the CDC changed its guidelines for hospitals and began recommending that every patient aged 13 to 64 be tested for HIV, rather than just those that report behaviors known to be particularly risky. It also streamlined the process, getting rid of a long-standing recommendation that clinicians provide counseling alongside testing. The change raises many difficult and uncomfortable questions. No one can argue with the goal of getting more people diagnosed, but is it enough to matter? It took Tracy 12 years to deal with his infection after he got diagnosed without counseling. And once hospitals identify the unknown hordes of HIV–positive patients, how will we provide them with treatment and care when the system is already overloaded?

Then again, maybe that's the catastrophic push we need to find a lasting solution to caring for people living with a disease that demands at least $12,000 per year in treatment to stave off death. The CDC's AIDS–prevention director, Kevin Fenton, warns, "The long-term costs of not diagnosing [infections] are going to be tremendous." It's only a question of whether we do it on the front end or, like the developing-world countries we look at with such pity, we do it after so many people are infected that the problem becomes unmanageable. Fenton put it best when he defended the testing push shortly after its rollout. "Whichever way you look at it, we're going to have to deal with this epidemic in real ways."